Initially I was going to do it in order of priority but mine change from time to time, and I was keeping in mind how much variation there is for other chronics, and ended up just listing them in no particular order.

But the post-exertional fatigue is a big one for me. And it is a sneaky one, the way it creeps up and whacks you afterward. Hard to do things when you don't know for sure if you're going to "get away with it" or not, until after the fact.

I hadn't thought of the medication sensitivities but you are right. I also can't take anything that isn't vitamins or supplements, other than a few naturopathic things that have worked for me. Even some supplements are a problem -- ashwaghanda is ok at a very low dose, but not two days in a row or I get ... wired, and get leg cramps.

Actually, I think my article's title was a bit misrepresentative, because it's hard to say what are top ten symptoms, there are so many out there, that I didn't even touch on (so many more than ten). The reason for the title, -- and the subsequent bending of the truth (ie. are they THE top ten) was because I am asked by empowher.com to write one Top Ten article a month on any topic and I have been making them all CFS related. So, ... I did bend things a bit, so I could write another article about CFS symptoms.

I guess the website has certain things they've found to work to bring in readers. I've only done 2 so far, so hopefully I won't run out any time soon.

I have noticed both of mine so far have gotten a good reader response. The first one (a month ago) has over 1600 page views and still slowly climbing. And the one from the other day has more than 700 so far. So, I guess maybe their formula is working.

It's funny. CFS gets so little attention in the media, from govt and the medical and research communities. But any articles online on the subject get ALOT of readers. It is the hip topic these days. Go figger.

And I never was one of these people who want to know what somebody ordered when they went out to dinner. You know, those people, who are not interested so much in hearing about what the folks were talking about, or what happened during the evening -- all they want to know is, "What did you order? What did you eat?"

I also know people who will tell me in great detail what they had to eat when they were at a restaurant, down to the types of bread or rolls.

Nope, never understood that fascination.

But I like this thread (I think I started the Dinner thread) because some of us are really missing some of the peripherals of life -- the mundane, everydayness, that healthy people take for granted. But when it disappears as it has for most chronics, we miss it.

So, we talk about dinner, about who was there, about whatever other mundane, ordinary stuff that we don't get anywhere else.

I promise you, if you show up there Marco, your diet will be the least of our focus.

I agree that Post-Exertional Malaise is the most debilitating, at least for me. I would put joint and muscle pain second then lymph node inflammation. Lately, it seems, that the brain fog has increased dramatically and is really causing more problems. Orthostatic Intolerance seems to go along with the post exertional malaise and the vertigo comes and goes in waves.........

If my kids would stop interupting my thought process every 3 seconds then I might be able to have a complete thought on occasion.

Jody, My symptoms have also changed in order of severity over the years and have a long list of other symptoms that have come and gone...and come and gone. Still, I think I could deal with all the pain if it wern't for the post exertional malaise. That one really sucks..

ChronicallyFatigued....I'm dying to know what your having for dinner tonight.

Interestingly 100% of those top ten also find a place in the top 50 or top 100 of active b12 and methylfolate deficiency symptoms. As many folks have 50 or 100 symptoms they often find a place for every one of these, I know I used to more than 5 years ago and during a brief interlude recently thanks to glutatione precursors.

Hi Jody,
Thanks for a great listing. I am confused (not about your list) and value your experienced opinion.

I have a "classic case of Fibromyalgia" and two positive Lyme tests. I qualify for a diagnosis of CFS by the newer CDC criteria and I have every single symptom on your list, except that I have to stand up for 30 minutes before I feel like collapsing, probably because I have high blood pressure (though the systolic pressure does drop 24 pts. when I stand, which is usually attributed to adrenal fatigue).

What confuses me is the old CFS criteria for diagnosis. Remember those? They were much tighter and separated "symptoms" from "signs". Whereas the newer criteria lump all symptoms and signs on one list, the old criteria required you to have at least two of the following: recurrent sore throat, swollen glands, or low grade fevers. I had none of those, so I did not qualify as having CFS by the old criteria.

I have long been suspicious that the CDC combined the symptoms and signs into one list to blur the lines between FMS and CFS so they could spend less money on it by combining the research on both into one. After they changed the criteria, 70% of FMS patients qualified for both diagnoses.

Maybe they are one and the same. Also, I know many people who say both FMS and CFS are always Lyme. In my case, I had FMS for decades before CFS and CFS for almost one decade before Lyme. I don't see them as the same, just as more deterioration in a long downward spiral.

What do you think about all this? In your opinion, would you say someone probably does have CFS if they do not have fevers, sore throats or swollen lymph glands?

Don't be sidetracked by the fact that I wrote an article, into thinking I am some kind of expert.

There are many people here on these forums alone, who are more knowledgeable than I am about all this.

To answer your question though, I absolutely think that a person can have cfs without fevers, sore throat and swollen glands. I didn't have these particular symptoms throughout most of my illness. But I was still very very sick and I would say I had / have cfs.

Thanks for your opinion, Jody, and please don't worry about how "expert" you are.

I think most of us on these forums are more "expert" than most of the physicians we see, at least in my case, but I understand the need for a disclaimer.

Here's a far out expert opinion that I got once.......you may enjoy this story. For my birthday in 1998, I was given a reading with a nationally known psychic. It was a telephone reading, and he had nothing beforehand but my name and credit card number. I made sure there was nothing ever put on that card that was health related before I used it, since I intended to ask mostly about my health and did not want to give him any clues. The first words out of his mouth were: "Have you ever heard of chronic fatigue syndrome or fibromyalgia?" I was not going to help him, so I said: "Yes, I've heard of them". He then said: "Well, you've got them both". It went on like that for 30 mins. of very specific things, some of which I thought were absolutely impossible, but all of them did come true within the following four years. He only made one error, and it was something he could have avoided simply by noting my area code when he called me! FWIW, he said both FMS and CFS are caused by unusual viruses that humans had not been exposed to before the rain forests were burned, letting the causative viruses and many other bugs loose into the atmosphere.

Thanks for your opinion, Jody, and please don't worry about how "expert" you are.

I think most of us on these forums are more "expert" than most of the physicians we see, at least in my case, but I understand the need for a disclaimer.

Here's a far out expert opinion that I got once.......you may enjoy this story. For my birthday in 1998, I was given a reading with a nationally known psychic. It was a telephone reading, and he had nothing beforehand but my name and credit card number. I made sure there was nothing ever put on that card that was health related before I used it, since I intended to ask mostly about my health and did not want to give him any clues. The first words out of his mouth were: "Have you ever heard of chronic fatigue syndrome or fibromyalgia?" I was not going to help him, so I said: "Yes, I've heard of them". He then said: "Well, you've got them both". It went on like that for 30 mins. of very specific things, some of which I thought were absolutely impossible, but all of them did come true within the following four years. He only made one error, and it was something he could have avoided simply by noting my area code when he called me! FWIW, he said both FMS and CFS are caused by unusual viruses that humans had not been exposed to before the rain forests were burned, letting the causative viruses and many other bugs loose into the atmosphere.

It's a strange world....
klutzo

Click to expand...

Hi Klutzo,

I had the chronic swolen glands from childhood until I did the Pauling vitamin C thing, 16 grams a day. They decreased to normal in about 5 years. I had during that period a pretty clearcut case of ME except it wasn't characteristed or anthing at that time so it became "It's All In Your Head". At around age 30 I developed a pretty clearcut case of traumatic injury induced FMS except, you guessed it , "It's All In Your Head" because FMS hadn't been described or accepted yet. At 39 I developed a clearcut case of virus infection CFS except yet again it was diagnosed as "It's All In Your Head" as CFS was very debatable then. So the docs don't understand it, blame the patient and tell them its psychosomatic and all in your head.

Now interestingly, I have found what cures ALL these things, and once again, some folks take that as even more evidence that "It's All In Your Head". In finding the treatment, these experiences, the traumatic injury and the virus, both become triggers in a larger experience of a lifetime of such triggered periods that I managed to recover from in a period of months each time. That these trriggers exist is quite clear to me as I expiernced more than half a dozen in my life. What they trriggered were certain deficiency syndromes that were on a tipping point, that once pushed over the edge, without treatment, there was no going back. In finding these deficiency syndromes, I find that there are 4 main forms of b12 deficiencies combined with folate deficiency making 8 main divisions that form up in various combinations giving CFS, FMS, CFIDS, ME and ???? (unnamed variations) Then there are additional modifications depending upon a few other factors such as poor mitochondrial funtion and/or poor methylation.

The differences between those 4 items are quite clearcut in the contribution each of the main deficiencies make. There isn't a single symptom of any of them that doesn't show up on a consolodated active b12 deficiency and folate deficiency symptom list. Even the grouping of symptoms for each syndrome makes sense in terms of the specific sets of symptoms for each type of deficiency. Of course there is overlap in symptoms as many of the specific underlying deficiencies have overlap. There are several causes for muscle symptoms, several for neurologiccal symptoms, depending upon whether peripheral or central depending upon whether it is lack of mito funtions in the nerves or damage or other funtional aspects.

I had several viral triggers of completely unidentified natures back in the early to mid 70s that were horribly infectious, prevented schools from opening, infected large percentages of people and that the CDC said were "nothing". I was sick for months with each. Finally one clobbered me and I was sick for 16 years until I got lucky and tried one of the two 5 star breands of mb12. Then I followed the trail of a dozen other items until I put it all together. My immune system was very weakened because of b12 and folate deficiencies.

Thanks for your opinion, Jody, and please don't worry about how "expert" you are.

I think most of us on these forums are more "expert" than most of the physicians we see, at least in my case, but I understand the need for a disclaimer.

Here's a far out expert opinion that I got once.......you may enjoy this story. For my birthday in 1998, I was given a reading with a nationally known psychic. It was a telephone reading, and he had nothing beforehand but my name and credit card number. I made sure there was nothing ever put on that card that was health related before I used it, since I intended to ask mostly about my health and did not want to give him any clues. The first words out of his mouth were: "Have you ever heard of chronic fatigue syndrome or fibromyalgia?" I was not going to help him, so I said: "Yes, I've heard of them". He then said: "Well, you've got them both". It went on like that for 30 mins. of very specific things, some of which I thought were absolutely impossible, but all of them did come true within the following four years. He only made one error, and it was something he could have avoided simply by noting my area code when he called me! FWIW, he said both FMS and CFS are caused by unusual viruses that humans had not been exposed to before the rain forests were burned, letting the causative viruses and many other bugs loose into the atmosphere.

It's a strange world....
klutzo

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Klutzo,

It is indeed a strange world. I have had a few things like that happen myself. People who had no way of knowing what was up with me, coming up to me and telling me surprising things, that were much closer to the mark than anything I heard from the conventional medicine docs I'd seen.

Hi Freddd,
I have read a lot about methylation and B12 and folate and have a friend who is trying the modified Yasko Protocol. I am waiting to see results from many, many people, since I have had both levels tested on a fairly regular basis, and my B12 is always high normal, while my folate is consistently above normal range. I've even been warned that I am hurting my kidneys by having such high folate, and should take a multivitamin with less folate in it. I don't believe that, but I did change formulas. I eat such a high folate diet, I doubt my levels will get much lower. I am very glad you've found a solution and I hope you keep on feeling better.

Hi Jody,
I think most of us would be having experiences like mine and yours if we used our right brains more. We live in such a one-sided world, due to the worship of the left brain in western societies, that we miss all sorts of things that are right in front of our faces. Nothing paranormal about it; it's just noticing life from a different perspective. Because that man was so accurate about other things he said, I often wonder if he might be accurate about CFS and FMS as well. I've certainly never heard anyone else put forth that source for their origin.
I figure you should trust those hunches you get. After all, the part of your brain they come from is a far older part than the logical part, with it's ego-controlled "logic", and was most likely what humans had to rely on to survive throughout most of our history. I've learned a hard lesson about logic, namely that some of what seems totally illogical is merely the result of not yet having enough information.

I think most of us would be having experiences like mine and yours if we used our right brains more. We live in such a one-sided world, due to the worship of the left brain in western societies, that we miss all sorts of things that are right in front of our faces.
I figure you should trust those hunches you get. After all, the part of your brain they come from is a far older part than the logical part, with it's ego-controlled "logic", and was most likely what humans had to rely on to survive throughout most of our history. I've learned a hard lesson about logic, namely that some of what seems totally illogical is merely the result of not yet having enough information.

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Yes, this has been my experience too. The doctors I saw during the first 7 years of my illness were useless. ALL of the most important answers I got to questions regarding CFS/MCS came from miraculous synchronicities--like the book from the flea market that finally gave me my diagnosis, or friends who turned me on to supplements that helped me overcome some of my worst symptoms.

I have had psychic readings too that were more accurate than info I got from visits to doctors. Though I wish they had more answers about the actual cure for this malady.

Trusting hunches, listening to my intuition, tuning in to my dreams--this has all been ESSENTIAL, in fact often a life saver, on this journey back towards health. If I had gone on logic alone, I would have not made it this far.